Lessons from a spoonie nest

Not a proper nest today, the sun is making my little desktop nook snuggly so I’ve got more of a throne vibe going on with a faux fur throw and cushions galore, which I am fine with.

But I’ve been trying to really explain why I am working so much on making what is really a personal pattern book able to be used by anyone whether whole or in part.

I’m pretty open about having a very well defined autoimmune disorder that is so destructive that had I developed it 10 years earlier I wouldn’t be able to walk now. But likewise the incredible difference biologic therapy causes also means that had I developed it 10 years later I might never have any erosion or pain.

It took over a decade to start the biologics, despite their safety and efficacy being very well known, and so I have a fair amount of damage I never should have if the advice from the research was followed, rather than forcing my my entire medical team to follow “Step Therapy” which is actually fail first. Not my failure, not my teams failure, the plan to save money failed me.

Essentially you try the cheapest therapy first and have to give it a trial period. If that doesn’t work you try the next cheapest but again with a defined trial period. Once you get to the biologics the cost is about the same, about $1k/week. My infusions require a day stay in hospital with a crew of nurses who do everything from admin, to obs, to administering. (The protocols of my first hospital were easy to know so I brought care packages, my newer has been harder but I’ve built up my care packages and

So I know how very limiting barriers are to quality of life.

So I’m not exactly out here gatekeeping or putting barriers up.

Going through the extant tailoring and dressmaking manuals that cover a few hundred years? Gatekeeping and barriers galore! But it’s still possible to take those works and poke holes in them.

One example is that many books from the 1860s-1880s allow for personalisation at the top of bust darts, but not at the bottom. So a broader bust was adjusted through darts that were on a more oblique angle than a narrower.

So I’m trying to express how the idealised figure was adapted for real bodies, but without the baggage so many of these instructions come with.

A big yikes to so much of those ~500years of writing.

As a side note, I’m now of an age I never really thought I’d get to, and have another 20 years if I’m lucky. Maybe more, depending on how much freedom I have in what keeps me safe and frankly alive.

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